Sigh

Mar7

All I got right now is that the hair is starting to come out. Which makes me very sad and kind of freaks me out a bit. But it’s only temporary, and it will grow back. You can prepare for it and know that you will wear fabulous scarves and stuff but when you actually run your hand through your hair and clumps come out its a bit unnerving. I just look awful with short hair anyway…let alone bald!

But alive and being able to see, hear, and function is more important that something superficial like hair I suppose.

It will be okay.

That’s about as up beat as I’m going to get with this one.

Beauty and The Power Port Princess!

Mar4

Yesterday I went to this free service they offer to cancer patients. They go over make up, skin care and all that jazz for when you go through Chemo. There was only 2 of us and the lady said they didn’t know if they were going to continue the program because of lack of interest. Well I told her the flyer I received was incorrect and if I hadn’t called the Local Cancer Society I would have never known when it was. I went and talked to the social worker who helps run some of these programs and let her know. She was like if I could think of any way to get the word out and see if we can’t revamp the program she would love the help. The below picture is all the stuff I got for free! There’s also a cute silver make up bag that didn’t quite get in the picture….

Then while I was in my make up session I got talking to the lady running it and we got all into the Event planning topic and we are going to get together to see if we can come up with some sort of plan to generate some interest and business around town. They already had their Bridal Fair here and she said there are currently no Wedding Planners in the area (that are specifically certified like yours truly) After picking her brain about the industry around here I’m going to revamp the website and tailor to more around the needs for this area.

I had my Port-a-Cath inserted today. This is a device they put under the skin that feeds directly into one of the large central veins that takes blood to the heart. They use a special needle to access my bloodstream so they don’t have to keep giving me an IV for Chemo and blood draws. Now they can just hook me up. Makes things easier for everyone involved. And my veins will thank me for it later. I always get all freaked out by surgery but have such a good time with the OR staff, so not sure why I worry. I had the nurses singing Cherish by Madonna upon my entrance into the OR. They had the radio on in the OR and turned it off. I’m like Turn that up! And the last song I heard when I went under was Lips Like Sugar by Echo and the Bunnymen. So that was kind of cool. But everything went well. I came out with little to no pain. I’m really kind of an easy patient…

Power Port front

Power Port Back

I get a key ring notifier, an ID card and a little bracelet that I wear to let the world know I have one of these. So no more poking arms and hand for IV for me! It’s called a Power Port

I’m currently set up with some pain meds and the remotes. So things are good.

Resting up this weekend before Cycle 2 starts on Tuesday!

Why is she such a hot mess???

Mar1

I’ve been sitting here thinking a lot about things lately. My latest revaluation came yesterday as I’m sitting here scratching my scalp and shedding more than usual. The head starts to feel weird when the first stages of hair loss start.

So a few years back I worked at a company and everyone there was pretty full of themselves. Not to say that’s a bad thing..in a competitive industry you have to be. The environment was such that if you made a mistake your competencies were questioned. Again, not a bad thing when you are writing code and it HAS to be perfect. The problem is other departments that you can’t be precise with were still treated like the programmers. Marketing is a little different than writing lines of code. Different skill set and social set. Anyway. The marketing department hired a woman who had a fabulous resume. She was a little odd…in a quarky way and wasn’t readily accepted by the group. People would comment on “why does she always wear that stupid hat” or “why doesn’t she do something with that mop on top of her head” or “what the hell is she wearing today?” She seemed to always have a story that everyone took as excuses and accused her of just being lazy and riding the system. She would sometimes not necessarily tell the truth on things that she did or didn’t. Needless to say she didn’t last very long.

What made me think of her? Well…she was a cancer survivor and was trying to get back into the work force after her treatment. She wore hats because her hair never quite fully grew back and she had sort of become accustomed to wearing them..and she was self conscience about her hair…these hats were her signature now. The clothes she wore were her. It was her confidence and she felt comfortable and good in them. The stories…well that was the lack of confidence and going on the defensive because every decision made was challenged by someone. She was trying to establish her credibility…not brag. And her riding the system….well chemo messes with your brain and you fog out at times…you want so badly to have the mind and thought process you had BC (before chemo). Sometimes you just can’t think as quickly as you would like.

My whole point to this is I know I had always stated how tolerant I was of others and understood people. Sometimes you think you understand when really you have no clue. Everyone has a story. And just because you can do something doesn’t mean everyone else can.

The next time you judge that overweight woman at the grocery store in spandex think about what her story might really be. Or the overly skinny guy standing in line in front of you. What is his real story…

Did anyone get the number of that bus?

Feb26

Geeze Louise. These last few days have knocked me on my ass. Super tired, drained….feel like I’ve been hit by a bus. Just kind of crazy. Trying to keep doing the usual but with a little more rest. Last day of my Dexamethasone for the cycle. Which is good because I think it contributes to some of this fog/tiredness. Not positive yet though. Hell that may be what is keeping me going. Only time will tell. I’m also trying to get this other med stuff on a schedule that works and lets me actually sleep. I think I’m one step closer! Lots of fog going on. Communicating and thinking clearly is a struggle. So who knows if this blog post even makes sense! Ramble! Ramble! Ramble!

And let me just say what a money maker this cancer business. A little over $10K a pop for 1 chemo session. That’s crazy shit!

So overall I’m still here. Not a whole lot to report other than the above.

Trying to figure out what to do this weekend. The closing on the house is still set for Wednesday. Then I can focus on something new and different and fun! Will finally start getting to schedule things and start the renovation so we can finally just move in and settle into our new home. This transition stage has really gone on long enough. I really can’t wait to sit out on the deck off my bedroom (or dining room) and chill out! I can say I’m not going to miss the apartment living and the thunder of the trains nearby!

Tiaras!!!!!

Feb24

So I just went in for my white cell booster shot. First, we don’t use the terms “The Red Devil” or “Red Death” I guess that’s not appropriate. I thought my Navigator was going to lose it. (still kind of funny)

But I may have talked everyone into an arts and craft session to have everyone make their own tiaras for Tiara Tuesdays. Again….one freakin tiara at a time! It’s going to be a thing eventually! I mean it’s kind of perfect…since you have like 3-4 hours to sit there and do nothing…why not. Yes once this happens pictures will be posted. I mean how could I deny that!!!! And if it doesn’t go down….I’ll make tiaras and hand them out to people. But one way or another…it will happen!

tiara_10272

“Red Death” or “The Red Devil”

Feb24

It’s always reassuring when you have something administered into your body with the names “Red Death” and “The Red Devil” by someone with all sorts of protective gear on. After 24 hours that part is starting to sink in. Needless to say it’s some pretty potent shit. Well see how these next 8 weeks go.
I am not going to spend a lot of time on what I’ve read and what I’ve been told because everyone’s chemo/cancer journey is different. Another 46 year old with the exact diagnosis as me could have a very different experience. So with that in mind these posts are specific to my situation and expirience and should in no way be taken on how it will be for everyone else or substitute speaking with your own team for advice or answers to questions.

Now with that out of the way…

It’s been a little up and down as the steroids are starting to wear off. At any twinge of nausea I take the meds. I have to say I did not sleep the first night for fear of not waking up. Breathing would slow down and then I would freak out that Pete was okay. So about 11:30 I moved to the living room so at least someone can sleep. Cleo will follow me so she will leave him alone as well.
I did catch about 30 minutes and the apartment living kicked in.
So I’ve been sitting here since about 1 trolling sites and playing games. It’s now about 4:30am.
I took more meds at 3 am since I was due and the nausea and anxiety were kicking in.
I did eat last night. Mostly some nuts and some organic whole wheat pesto rolls. Yay heartburn. I suppose that will be a thing. We’ll see what foods I will learn to hate today. I have been told by the nurses (and docs and pharmacist) that my taste buds will change and if I really love a food don’t eat it because after all this I will hate it from here on out. Right now nothing sounds good so I have to find something. Will probably do smoothies so I can get some nutrients in and not have to actually chew. We’ll see how that goes.
I’m sure I’ll have more updates….know that they aren’t always going to be fun filled and humorous. Sorry about that in advance. But that’s why want to keep this off of FB…I can’t do serious downer posts…..that’s just wrong!

The First Day of the Rest of My Life

Feb23

First Chemo session was today. I’m not going to lie. I was a mess this morning. I mean the whole “this could be the last time I wash my hair” but then countered with “this could be the last time I shave my legs” So it kind of evens out a bit. Going in was rough. Learned that if you cry they clear the room. So that’s something to keep in my back pocket for the future.

The doctor came in and talked to me about what was going to happen and my Genetic Test report came back and I do not carry any gene for any type of cancer. So…..fluke. “No variants of clinical or uncertain significance were detected by sequencing in BRCA1 or BRCA2. No large deletions or duplication were identified.” So at least nothing that was detected through this. It is still possible that there is a pathogenic variant that isn’t detectable in these tests or another gene.

The other test that came back good was the EKG. So heart is good to go for stuff. Also good to know. That test was fun to watch actually. I mean pretty amazing stuff. I do think that when you are like in your 20s you should have a PET and EKG done just so that you can see that you really do have these organs and stuff and how delicate everything is…and maybe you won’t do things like eat stupid shit for a long time or smoke or drink like a fish. I don’t know…just a side thought.

Okay so today. They do some blood work to make sure everything looks good, and to see if there have been any changes since the last time they took blood from you. (this is going to be a thing.) Then because I don’t have my port in yet they had to do an IV. There is one chemo drug that it’s not ideal to do it this way but more on that in a second. After they do the IV they run saline through you then give you a bag of it to hydrate ya up a bit. Then you get some drugs for nausea and a steriod. (Zofran and Compazine) This is about an hour. Then you get the good stuff. Because I had the IV they had to manually push the Adriamycin in. It’s really hard on the veins so they had to go back and forth and administer it in small doses and dilute it a bit with the saline. Nurse had skillz. It’s red, kind of aggressive looking. But it’s the stuff that’s going to knock Cruella off her horse.

Then after that one they hook up the Cyclophosphamide. This lasts about an hour. After that’s done you finish off the saline, they disconnect you and you go home.

This part of the chemo is the most aggressive and harsh. That’s why it’s every other week for the first 4 sessions (cycles). Then the next 12 weeks is still aggressive but not as…so I’ll go once a week for that. For all you medical types that chemo will be TAXOL.

I talked to the dietitian today which was very helpful in what and how to eat. Not too many changes. Don’t eat any added sugar if possible. Stay away from processed foods. Don’t eat anything low-fat or fat free. Don’t cut out food groups. Basically a Whole Food diet. Everything in moderation. And exercise. I feel pretty good about that because I really do love certain things! But the goal throughout chemo is to maintain weight. Not the time to be trying to lose anything. And obviously try not to gain any. Then after chemo is over I can work on the losing weight thing again…but I have to use the parameters stated above.

Tomorrow I go in for a shot of Neulasta/Neupogen to boost white blood cells. I have a bunch of anti nausea meds and anxiety stuff. So I should be in good shape.

Now. I had to tell the story of the tiara. The nurses are all going to see if they can’t make Tiara Tuesday an official thing every week in the “Chemo Lounge.” And they are going to see if they can order minion stickers or band aids. See….changing the world one step at a time!

That’s all I know right now. So we wait to see how I react to all these drugs and stuff. OH. The chemo drugs stay in the system for about 72 hours. And then I recharge and reload til next time.

Warning. If I start repeating myself it’s not my fault!!!!

Thank you all for the love through this so far. I really am lucky to have such a wonderful group of family and friends for support…even if everyone is far away. Just know it does help pull me back into battle mode. And tonight…and every Tuesday in addition to tiaras, everyone should pour their favorite drink and raise your glass for me. I can’t drink right now so knowing that all of you are will make me happy! Live vicariously through you all until I kick this thing in the ass.

MUUUUUUUUAAAAAAAAAAAHHHHHHHHHHHHHHHH

And So it begins….

Feb19

Happy Friday! First let me say PET/CT scan pictures are way cool.

So the PET/CT scan came back and they didn’t find any cancer any place else. That is a good thing. It is localized. Because there are a few lymph nodes that are positive I have been staged at T4B Stage 3B. So it’s not a 4 so that’s another good thing. We also have a plan of attack. Monday I go in for a Echo cardiogram. This is to make sure my heart can withstand the Chemo that I’m starting on Tuesday. I get the port put in on Friday March 4th.

So far the treatment schedule is Chemo for 22 weeks. Then Surgery (mastectomy). Then Radiation. And finally (anti)hormone therapy.

Going to be a long road. But at least we have a plan now.

Fa La La La la.

Testing and Shit

Feb17

Yesterday I met with the Surgeon. No news, but we are just in the stages of meeting the doctors who are on my team and what they do and what role they play. So far I feel very comfortable with all my doctors. So that’s a good thing.

Today I had my first PET/CT scan. Well whoo freakin hoo….Lots of sitting around and not being able to read or have my phone for 2 hours was a challenge. So you go in, you sit and relax. They give you Valium…that was awesome. Then they put an IV in your arm and make you sit there. Then test your blood sugar. Because well the isotopes are glucose so…for it to work I had to eat high fat low carb the night before. No food or anything for 4 hours before the appt. If your blood sugar is too high they won’t do the test. So After they have you sit for an hour they move you into this little room. Again you sit there for like 20 minutes then they inject you with isotope that is “specifically designed for you.” How special do I feel at this point. Now I get to drink this white milky drink that kinda tastes like room temperature berry shake. Maybe it wasn’t bad because I hadn’t had anything to eat since 4:00pm the night before. But then you get to sit some more for 45 minutes. When it’s your turn they take the IV out. (thank god!) Then you get to lay there again. (lots of lying around today). So for 30 minutes I had my arms over my head, feet rubber banded together, and pillows on either side of my head. DO NOT MOVE! Well it wasn’t as bad as the MRI really. A lot more quiet. Kind of soothing. Of course because I have this obsessive compulsive thing….it took about 3.5 minutes for each section they took pictures. Yes I seek out patterns. Like yeah..what else are you going to do when you have to just lay there count time!!!! Then finally….TA! DA! You are then done. They take you back to where you started to take your blood pressure and make sure you have a clue. (I was touch and go on the having a clue) I honestly think I have way too much fun in a hospital. I asked if I could take some of that Milk/berry contrast home because it was THAT good. The nurse offered me like a whole bottle to take with me if I wanted. I didn’t take it…I didn’t want the other patients to be jealous that I got to take it home. But once again….success…got everyone I came in contact to laugh today.

So, home. Yeah….nothing is going to be happening with me the rest of the day….Said Milky/berry contrast is not a friend….it is an evil foe. And that’s all I’ll say about that!

All the tests should be done. The docs will sit around and talk about me and what they think they should do with me tomorrow. Then Friday they will present their ideas to me and I will approve or send them back to the drawing board. I do have a pre-op appointment on Monday for my chest port. I wasn’t real keen on that until today. You can really only be poked in the arms so many times before it starts to hurt. So this will make everything easier or everyone…especially me….and really that’s all that matters! (ME! ME! ME! ME! MEEEEEE!)

Well that’s all I got up to this point with all that!

The house. Geeze Louise! Spent most of the day on the phone yesterday trying to get the bank dude to do his job. In the two other houses we have purchased we have never had to constantly stay on top of the bank to make sure deadlines are met. I mean if I had heard one more time that “I don’t have that” when I have the email that I sent with that….I was going to ring his neck! That and don’t tell me you mailed something when you didn’t. (The bank is literally 3 blocks from where our apartment is….why are we mailing anything? I can come get that shit)

OH! and Total rant from bank visit. So I just wanted to cash a check. (I drove because I was running errands and had the dog) In a normal setting you park, go in, they punch the numbers, stamp it and give you money. Well, we aren’t normal. I go to park in the fast parking space where there isn’t a meter…because I’m only going to be like 5 minutes. So woman cuts me off and takes my spot. Fine…choice words were said and then I go around the block and park…everything downtown is metered parking. They have a new metering system. So I park get out and there is a line of 3 people trying to figure out how the machine works. oi. So I run in figure I can just quick get this check cashed and I’ll be out. Yeah…I crack myself up. I get to the teller and I guess he’s new or something….So he is trying to find the numbers on the keyboard. So I’m like…I’m going to run out real quick to see if the line has gone down so I can pay this stupid meter. He’s like “okay” Well I got out and you have to put in your license plate number (got new license plate the other day so no idea what my plate number is) and then pick if you want 30 minutes for $.50 or more. Don’t even need 30 minutes but it’s the least amount of time you can choose. I have no change, I have a dollar. It doesn’t take dollars. I get out my card. It doesn’t take a card for any amount under $1. Okay. Run back in the bank. Teller is still fumbling through my 9 digit account number (still). Finally I’m like…”how can I make this easier for you?” Blank stare. “If I just deposit this in the ATM out front would that work better for you?” The teller next to him says “yes, that would be quicker.” Okay fantastic. Go out front and deposit the flipping check into the ATM and then withdraw the amount. WOW. I mean really….why is this hard?

Went to get Cleo’s dog license yesterday. Yeah they don’t just give you the tag…they have to send in the paperwork (to another office 5 minutes on the other side of town) and then mail it to you. ????? whatever. So then we go to get our drivers licenses…yeah…guess who didn’t walk out with actual drivers license….because why? Oh they have to mail that to you too. This is not a very efficient state/town from what I have observed so far.

Oh transition. How much fun…..

Zoinks!

Feb12

Hasn’t been a real eventful day today. I am overwhelmed with all the love and support from everyone. “THEY LOVE ME….THEY REALLY LOVE ME…”

Had my appointment with the Radiology Oncologist. Well isn’t radiation therapy long and intensive. Sheesh! Basically this was just to get all the paperwork filled out there and then meet the Rad Onc. so that I know who everyone is. Again, she did an exam. (I swear everyone just wants to feel me up) Got her take on what they would do when the radiation therapy portion comes up. So we watched a video on it and got the rundown on how that all works.

So the one thing I did learn is that most likely next week I will get a chest port so they don’t have to keep poking my arm….I said I was okay with that since I didn’t want to have track marks and have people think I was some drug addict. So of course I didn’t know what a chest port was. I asked if I could bedazzle it. Yeah. You can’t. I’m also thinking about getting my own hospital gown. I mean I found a couple sites that have them. And some with matching pillow cases and hats! I mean come on…that has to happen. And I’m sure I can some how managed to get some bling in there.

So I have a few days off. Tuesday is the appointment with the surgeon (and the chest port). Then the PET scan Wednesday and I find out Staging and my plan of attack on Friday.

Making of a Diva

Reclaiming of the Inner Diva

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